HIV, spirituality & religion

Spirituality means different things to different people. For instance, it can mean believing in a higher power, trying to find a higher purpose in life, finding inner peace, or feeling connected and in balance with others and the natural world. When the people we spoke to talked about their spirituality they were describing a personal journey based on their own experience.

A retired gay health professional with a grown child, who was diagnosed in 1995. At one stage in 2000, he did not want to go on living, and took an overdose.

But spirituality is [sigh] it's that being, belonging sort of [pause]… knowing there's a reason but you don't know what the reason is. It's a sub-conscious thing, it's knowing, knowing that [pause] even though we've got a brain to think, even though there are people out there, there are killers, there are terrorists, there are… but the majority of us don't do things like that.

I think, I think that's what spirituality is. It's that feeling and that being able to live in harmony with everything else, not just human beings, but the world itself. I suppose that's the point I've come to with my spirituality, it's… it's… well it's quite important to me I suppose when I really, really do think about it, although I don't think about it very often.

As far as organised religion is concerned, I've come away from that now. It doesn't mean anything to me at all. It's just a way of keeping the population in check.

The point I've come to [pause]. Because I haven't just got this virus, my son's got it, my partner's got it, although they're negative, you know, in that sense of the word. But they're living it the same way as I am. We don't talk about it very much , but it's as… it's as much with them as it is with me. That's my spirituality associated with HIV I think. That's the only way I can describe it.

Religion

There are many different religions in the UK including Islam, traditional African, Judaism, Christianity, Hinduism and Buddhism. This summary only discusses Christianity in any detail because the people we talked to discussed this religion the most.

Most (but not all) African individuals we talked to were very spiritual in their thinking, and attending their place of worship was often important to them. For people who had to deal with very challenging life circumstances (e.g. uncertain immigration status, death of family members, poverty), religion could be a source of enormous support and encouragement.

A 43 year old woman from Africa who describes herself as 'coloured.' She was diagnosed when she went to hospital very ill with TB.

What I can remember is that I spoke about my life. My childhood. How difficult it was. As in always having to be the eldest. Always having to be the person who sets the example. Always having to be the strongest, the shoulder. The mother, the father. I spoke about that part of my life. I spoke about my disappointments in life. My marriage. I spoke about more disappointments in life. As in why can't I be' Why can't I remarry? Other people get married 3, 4 times. I did it once. I wasn't in the wrong. My husband left me for someone else. But why can't I be happy? Why can't I find that happiness? I cook. I clean. I think I'm a good person. I think I've got a good heart. I, I like helping people. But what's my problem? That I can't find somebody that I want to marry. Oh people they want to marry me. They did. But I can't find anybody that I want to marry. It's not not being able' It's not people not wanting to commit to me. It's me not wanting to commit to them. What is my problem? So I went through that part. I then went through the part of saying, 'I'm sick. I don't mind going now. But there's so much I need to do. And I'' My, my daughter that's back in [Africa] had just had a baby in the August before. Who I've never seen. I haven't laid eyes on. You know, in the physical. I've seen photos, yes. I've spoken to my granddaughter. Until today I've never held her. And I felt I needed to accomplish all that. I needed to still sort that daughter's life out, my granddaughter's life out. I still needed to wait for other grandchildren. So that was my reasons of saying, 'I can't go now. There's too many loose ends I need to sort out.' You know. And Jesus said to me, is, 'You are healed. You are healed. But you take your medication. It is through your medication that you are healed. It is through me that you have the right doctors, have the right medication, that you are healed.'

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Profile Info

Age at interview:

47

Sex:

Male

Age at diagnosis:

41

Background:

A heterosexual married man who has 2 grown children who became addicted to heroin as a way of dealing with the pressures of war. He became infected with HIV through needle-sharing.

So the God is. God, I can say an only thing. It's my point of view. But I really believe in that. That the drug problem it's not the problem of health. It's the spiritual problem. I just know' For example, if you have no hope but, human being' Everyone needs to have a hope to survive. And you are looking for one and someone tells you about that God. God... can help you. Just it's the only hope you can accept. So if you are a clever man you have to use this possibility to save yourself. And if you accept Jesus, you can get more than just survival. You can get even eternal life.

So, if you're a clever man why you don't live this possibility, this opportunity? If you are' oh it's not a big secret. Everyone knows about junkies, they have no real friendship. How can I get this disease? I took a syringe from my best friend. I was, as I was thinking at that moment. And they, they were, there was a bit heroin' I asked him, 'Have you got a blood here?' 'No it's clean.' Straight away after, after the fix I felt myself completely bad. And about two days I was really bad. And in a few months I was diagnosed. So the best friends of mine gave me, present me these two even three diseases. So what kind of friendship... can you say, just hell. So and normally and when you're, when you're realising that you know at once you have to find something more valuable. All your experience is saying that no one among people which' to whom you can believe you can trust. So you are trying. Because you are desperately need to find something good that can help you. And Jesus is exactly the person who can help people like me.

On the other hand, given the long history of religious intolerance of sexual minorities like gay men, it was not surprising that many gay men had deep misgivings about organised religion. One man said, 'To me it's a crutch. Some people need a crutch. Some take alcohol. Some take Jesus Christ.' Also, gay men frequently had to overcome ingrained negative messages from religions that being gay makes you sinful or a bad person. But as one gay man said, 'He (God) created me as homosexual… So I'm not a sin. So I have to tell myself that, everyday, time to time. It makes me feel good.'

Instead of strongly advocating a particular religion, spiritual gay men usually discussed their views in less conventional terms (e.g. 'I generally try to respect other people. And be nice to other people.') As one man who had lived with HIV for many years said, 'I like the idea of earth and nature and animals. And the awareness of breathing. The awareness of being alive.' Another long-term survivor said, 'I am not quite sure what belief I have. I feel I am quite spiritual because I still feel even today, there but for the grace of God go I. I am living with HIV and I am not on any medication.'

Religious ceremonies can also be comforting even to those who are not at all religious.

Clint was infected with HIV at the age of 17 from a partner at a time when he lacked knowledge about HIV.

I just have a view that it's better to believe in something than nothing at all. I have' I try and understand the fact that I, what, what has happened to me at a younger age, that, I believe there is a reason for that. That, you can't all' you know we've all got stories, you know people who are watching this, we've all gone through experiences that are difficult in life. Sometimes you just can't change what's going to happen to you, but the only response you can is how you deal with it. And that's always been my mind frame to cope with HIV.

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Profile Info

Age at interview:

63

Sex:

Male

Age at diagnosis:

48

Background:

A retired GP living with his partner of 9 years in London. He was diagnosed in 1990 after unprotected sex at a time when he assumed he was HIV positive.

But it's an enormous help in saying goodbye I think. I mean when [name] the Rector of [hospital], of [church] at the, towards the end of the service says, go [name of partner] go join the angels and so on. Well you don't have to believe in the angels, but actually physically saying go [name of partner] go, is, is a very helpful way of knowing that, that he has gone. And to say goodbye I think, especially with so many people there. So although I'm not religious, I do think these religious ceremonies have grown up to, to fulfil very necessary human needs.

When religion does not offer support, this can contribute to negative thinking. For gay men, religion could make it hard for them to accept their sexuality. For Africans, the stigmatisation of people with HIV even within religions is a huge problem. Unfortunately, for many Africans, this means keeping silent about their HIV in the church or the mosque, rather than seeking support. 'We do go to churches. You are even worried to tell even your pastor about it. If you tell your pastor it's going to spread now, it's another stigma.' But as one woman said, 'God has not cast you out because of your condition. God loves everybody… The lepers were just at almost the same situation as ours… Jesus (put) out a hand and took them on.'

People were often pragmatic with their religions, accepting what was useful while ignoring ideas that they considered wrong e.g. 'you can hear even the Catholics said you should not use condoms… But I object that. A condom is important, it saves a lot of lives.' Some women even talked about setting up their own prayer meetings for Africans with HIV. More hopefully, some religious communities are responding to the HIV crisis and are now beginning to embrace people with HIV.

A 46 year old black African who is a highly educated professional with a grown child.

Because some of the priests is… some of them are really quite... quite unhelpful to be honest. They tell the congregation not to use condom and throw it away or don't take your medication, you can be cured by coming to the church… they continue indoctrinating the congregation to a point where some people have decided to throw away their medication and become very ill. But some priests address the issue much more positively than the others.

They are telling people not to, put away the medication... person is... So… On the other side they are also quite helpful, you know the churches… HIV positive get quite a lot of comfort in the churches actually… they meet a lot of other people there. You know those... sort of... can be very comforting. Depression and all that and you can discuss your issues… about believing God and all that.

It's been very helpful, along that line. Emotional support... in the churches. You meet other people, you talk freely, you are not isolated you are not alone, you know. If you are strong you can even disclose, the situation and you are strong and you can disclose the issue I mean… some of the congregations are very supportive to HIV positive people.

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Profile Info

Age at interview:

30

Sex:

Female

Age at diagnosis:

29

Background:

A 30 year old woman who came to the UK from Africa after her husband died in 2004, but became ill and was diagnosed with HIV.

And they (the church) were talking about one membership with… one church with about 25% membership are infected. The other church was about 70%. And the other churches they don't know, but they know that some people in there are infected. So they said how long are we going to keep quiet?

To begin with people were, some people didn't want to be involved, they didn't want, didn't want to be part of it. But after discussions and after the workshops, we then had a workshop, we were divided into groups, then we had a workshop running within the church for that afternoon… (that) were debating and discussing issues, how would you treat a member of the church if they're HIV? What would you do?

Some people would say, 'I think they are promiscuous, I think they are cursed, I think they are evil', yeah. They said all sorts of ugly things. And then they (the facilitators) said, 'If you take yourself in the position, if it is you who was HIV positive, how would you want people to treat you?'

Some people really found that, they really looked at themselves as people with, in this situation. And they got to appreciate what the people… how the people are living with HIV felt what they are going through. And they started turning back, and they were saying, 'It's quite unfortunate we didn't quite know what these people were going through.'

So I think we have to stretch out a hand just like Jesus did. We have to love and to show love, to give them all the support that we can, and we want this programme to go on… At the end, end of, at the end of the day that was what was agreed on.

And they said there were going to be programmes running from time to time on HIV, Aids within the church from that day. So they… and so there were psalms composed for the day and everything and the day went off perfectly well, yeah.

Prayer

Prayer is about communicating with a higher power to express feelings and thoughts, offer gratitude and make requests. For the people we interviewed, praying worked in three main ways.

Firstly, praying helped people because an HIV diagnosis can feel very isolating. Having a sense of a higher power that you could communicate with could be very comforting e.g. 'I think when you pray usually you feel relieved that you've talked to somebody.' When things are not going well, a conversation with a 'higher power' can provide a focus for overcoming negative thoughts and expressing difficult feelings like grief. For instance, some people were able to express anger with God when facing death, or used prayer as a way to remove themselves from negative thoughts.

Has only recently returned to full time work. He was diagnosed with HIV as a university student, and in 1997 he very nearly died from HIV-related illnesses.

And so that was the tough one when he (the doctor) said, 'You know it is KS.' So I said, 'This means then that I guess I have got a new diagnosis.' And I couldn't even bring myself to say the word. And I asked him to give me the diagnosis and he said, 'Yes, you know you now officially have Aids.' And that was the worst. The HIV diagnosis was a shock because I was not expecting it. But this was worse because I had spent the last three to four years fighting not to be in that position. And determined that HIV was not going to equal Aids. In my case. I was going to beat this, I was going to be a long-term survivor, I was going to be healthy, so getting that diagnosis for me was, was such a horrible feeling of failure. And I was really angry, and I felt like I was being punished. And you know I kind of had this whole thing with' I use the word of God very loosely, because I don't have any kind of religious background. But I developed a sense of some kind of a power for myself, that I felt I had something to trust, something that was bigger than me. And I have this kind of thought that you know that this was not right. I have done all of the right things, why the hell should I have to put up with this now. When I have looked at my diet, I've stopped drinking, I have stopped smoking. I am doing this, I am working on' I have been a good person and now I have got this and it is just not fair. I was furious absolutely furious.

It sounds like a grief reaction?

Yeah and because' you know' there was' I spoke about that kind of the borderline between denial and healthy scepticism and I you know, I was closer to the denial side than the healthy scepticism obviously.

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Profile Info

Age at interview:

34

Sex:

Male

Age at diagnosis:

30

Background:

An Asian gay man who was diagnosed in 2001 when he went along for tests following his partner having a sexually transmitted infection.

And I'm beginning to have a conversation between myself and my mind. I don't know. This mind person exists, like I talk, and somebody else is talk to me in my mind. It's happen during at nights. I won't sleep. I'll talk to myself. And I will answer. The person who responding to me, it is me, but it's in my mind. But it's always negative.

If I say, 'Why do I have to kill myself?' Then, then, I hear another voice say, 'Yes, you have to kill yourself because you're, you are, you are dirty, you are virus, you can't change anything yourself.' For some… I don't know.

I don't know. I do lots of pray. I read the Rosary and everything. I have some courage… I stop having a conversation with myself. Because you read the rosary, the beads, over and over again, you suddenly become a bit calmer. You begin to think very carefully what you're doing, what you're saying. Which is very important.

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Profile Info

Age at interview:

31

Sex:

Male

Age at diagnosis:

29

Background:

A 31 year old gay male care worker born in South America who currently lives in the UK. He found out he was HIV positive during a difficult time in his life.

I was really, really depressed, I didn't want to hurt, you know I, I just ask why it's happened to me… But I just went like, why it's happened to me? I have helped people like that (with HIV).

Before I used to be out, outside the part of the group, give support for these kind of people. Now I'm, I'm in here, made part of the group, why? You know and then when, I was very, very Catholic because my family's very Catholic and (I) pray and ask for… I was really upset. Really, really upset. I said like this is the pain that I get? I ask it to him (God), why me?

But then I… after long, long time I ask questions, I have the answer. I said fuck you're stupid, because you're having sex without a condom! Only because that, that makes sense.

Secondly, people said that praying helped to change a state of mind in positive ways. People linked their praying to having more hope, feeling stronger, being more courageous, feeling able to forgive those who had hurt you, being more positive about themselves and their lives, and having greater calmness. One African woman said that after her illness and diagnosis, ' I was praying quite a lot for God to give me strength… I found that really comforting. I thought that really kept me calm. It really kept me very calm and composed.' Although praying can still be useful, people who are very depressed may not feel like praying.

A 51 year old woman who came to the UK from Africa over 5 years ago. She did not know what was wrong with her husband who became sick and died back home.

With me my husband, we had five children together, he was ill… he didn't tell… and I didn't know what was wrong with him until he died back home. I didn't know… but when I came here, I just came here for a visit, to see my children who were here. Then as I was about to go back home. According to…when he died, even the death certificate it was gastroenteritis. But the way he looked, he lost weight!

I kept asking him, 'Is there anything you haven't told me?' And he said, 'No.' But when he was on his death bed, he said to me, 'I am sorry, I am sorry. I am leaving you with children, please look after our children, I am sorry for what I did to you.' I don't know what he meant.

When I was diagnosed… because I knew no men besides him, that is when I realised.

When I was diagnosed I was bitter. I cried, I was angry, I said, 'What did you do to me? You knew, why didn't you tell me?' So to me he had killed me, even my children, when I told them about my diagnosis, each one of them said, each one of them said, 'That is dad, what did he do to you? Now you are going to die.' I had to tell the children, 'No it's OK,' he has gone.

I had to learn to forgive him. I went to churches, because I was angry. Yeah I learnt to forgive him…

Because I was really bitter. Because I was crying, support groups too. It helped me to forgive him and just move on yeah… Yeah it was a struggle, every time I think of it, even at home, trying to pray and it would just come into my mind and then I would start crying, cussing and calling him names. Yeah. What am I to do, he is gone? I said I have to forgive him and go on, and leave the past, and look after my children. That is how I got over it.

Finally, many believed that through prayer, a higher power was able to intervene in illness as well as life problems to provide help.

A black African female health professional who presented with bleeding due to Thrombotic thrombocytopenic purpura (TTP) in early 2005. She was hospitalised where she was diagnosed with HIV.

Even when I went into hospital, when like things were happening. Like having blood pressures that were from nowhere, where… Having pyrexias of unknown origin. And the doctor's saying to me, 'We don't know where this pyrexia's coming from.' I used to pray. I would kneel down and pray. And I said, 'God, you are in control. You know every part of my body. And wherever this pyrexia is coming from, I want you to, to deal with it.' And, you know, it… What, what more do you want? If that pyrexia goes down without even an antibiotic. You, you say it's God, isn't it? Who's done it. It's God. Because that's in your belief.

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Profile Info

Age at interview:

43

Sex:

Female

Age at diagnosis:

39

Background:

A 43 year old woman who came to the UK from Africa 4 years ago to study, but became very ill and was diagnosed with HIV.

God helped me a lot because every time when I was in my… in the house, or even when I am on the bus sitting, I used, I'm, I, I am always saying, 'God help me and help all the people who are against us.' Because some of them they don't know how the future is like. And God help all those people who are suffering. And God help our children because they will be the leaders of tomorrow.

So God answered my prayer really. Because the time I saw that my CD4 count is getting up, and I get the discretional leave which other people they have been in this country for years and years, they didn't get this discretional leave. And I am getting more support than other people who are in this country for some years and years, they are not getting this support.

Really God is helping me, and God is answering my prayers. And I am still keeping alive.

My daughter is still keeping alive. She is going to school and I am having new friends, those who neglected me I have to pray for them to be having their better future.

I don't mind what they will be saying against me, but I will keep on praying on for them to have a better life in the future. Yes.

While some religious communities might insist that healing for HIV can happen only through prayer and not medication, no one we talked to believed that. Instead, people believed that being spiritual helped the medical treatment to work, or reasoned that medical treatment could also be seen as the work of God.

The National African HIV Prevention Programme (NAHIP) has developed resources for Christian and Muslim faith leaders and African community based organisations. The materials are used to increase levels of awareness on HIV and to change perceptions of HIV and Africans in the UK (see the African HIV Prevention Handbook - Putting the Knowledge, the Will and the Power into Practice).

A 29 year old man, single with an young child, originally from Africa.

I am a Christian and I value my religion very much. But normally for me, I don't mix religion with the… it's nothing to do with the medication. Because I know there are some ex, extreme people in my religion yeah? Some of the churches who are if you, if you start going to attend there, then they can start deceiving you that, leave your medication, they are coming to pray for you and... So that one I do, I disagree completely... I yeah, something to do with medication I don't mix with it, the religion.

I can take my medication, and then I go and pray like that, I look at it two, separate. Because God says look after yourself before he can look after you. So don't surrender your medication… God created us with wisdom, the wisdom to create medicine, which is the wisdom that is coming from God.

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Profile Info

Age at interview:

32

Sex:

Male

Age at diagnosis:

27

Background:

A black African man, married with one child. He has discretional leave to remain in the UK.

Yeah it is very important, I for one, yeah, religion is number one. Yeah because I believe in, in other powers other than me, and people around me. And so because of that belonging, because of that belief, I always think that this life is a normal life which we are all in, but there's a better life which is coming.

So, and, and it gives me power to grow spiritually, even when I take whatever I take, food, water, medication. But I know that all those are controlled by a, by a super power, who is God. I can take those and collapse, dead. But as long as God he wants to sustain my life, the medications will work, the food I eat will work, and everything around me will work.